RPM in end of life and palliative care

Clinicians from all specialties can use this guide to enhance services for adults who could benefit from remote patient monitoring (RPM) throughout their end of life and palliative care (EoLPC) journey.

Clinicians can use this information to help manage an adult patient who has a life-limiting illness or is approaching end of life, and would benefit from RPM, in partnership with family and carers. This includes patients in community settings, those who have limited access to primary care services and specialist support, and those who require increased monitoring.1, 2

    Use the general patient journey information together with this specific guidance for patients throughout the EoLPC journey.

    The end of life and palliative care journey

    For the purposes of this guide, we use the term ‘EoLPC journey’.

    To clarify this terminology and to highlight potential opportunities for RPM across the EoLPC journey, we have adopted the following five palliative care phases:3, 4

    • Phase 1: Stable
    • Phase 2: Unstable
    • Phase 3: Deteriorating
    • Phase 4: Terminal
    • Phase 5: Bereavement

    Identify each phase through a holistic clinical assessment that considers the patient’s current condition, individual needs and, where appropriate, the needs of the family and carer. The phases reflect the patient's current clinical status and can change.

    Phases are not necessarily sequential. Patients may move back and forth between some of the phases depending on their evolving needs.

    Movement between palliative care phases can be contextualised through well-established patterns of decline, as seen in 3 common progressive illness trajectories for patients:

    • Cancer (short decline)
    • Organ failure (intermediate with acute episodes)
    • Frail elderly or dementia trajectory (gradual dwindling)5
    • When discussing palliative care phases, consider levels of health literacy. The use of ‘stages’ may be more appropriate terminology for conversations with patients, families and carers.
    • Expected changes in symptoms and function associated with specific disease trajectories can also indicate clinical decline and phase progression associated with end of life. Clinicians specialising in palliative care can assist with identifying otherwise normal functional changes that can indicate phase progression.

    Key principles for RPM in EoLPC

    Select a principle to explore its importance to RPM in EoLPC.

    Patient identification and referral

    When determining a patient's eligibility for RPM, take into account patient suitability and alignment with the service model.

    Based on clinical judgement and the following criteria, patients may be eligible for RPM when they:

    • meet the general eligibility criteria, acknowledging that patients in certain palliative care phases may not be ‘medically stable’ but still appropriate for RPM
    • belong to a priority population
    • belong to acute, sub-acute or post-acute and chronic RPM EoLPC
    • would benefit from RPM to meet identified healthcare goals specific to different palliative care phases
    • express a preference for RPM. Use in palliative care phases must be informed by patient, family and carer preferences and goals of care.

    In addition to the general RPM suitability considerations, use the following key factors to assess RPM alignment with, and responsiveness to, the clinical needs and wishes of a patient along their EoLPC journey, in partnership with their family and/or carer.

    Key factorsConsiderations
    Type of monitoring

    Can the service offer the type of monitoring (intermittent or continuous) that is needed to manage the patient's symptoms and/or condition?

    Does the patient have internet connectivity?

    RPM platform capabilities Can the RPM platform collect and present data to track the patient’s symptoms, treatments and lifestyle factors required to optimally manage the patient at this phase in their EoLPC journey?
    Clinical review and trajectory

    Has the patient been recently reviewed by a medical officer?

    What is the expected clinical trajectory for this patient?

    Clinical optimisation and monitoring

    Are there any unmanaged, reversible causes of deterioration?

    • Are they appropriate to be addressed and optimised in community settings?

    If observations are being undertaken:

    • Are there defined and current altered calling criteria?
    • Are the altered calling criteria documented and included in the transfer of care?

    Has oxygen therapy been weaned or optimised for discharge (if applicable)?

    Does the patient have access or isolation issues?

    • Would RPM enable end of life palliative care where care would otherwise be absent?

    Does RPM support the patient's quality of life at home and enhance access to care?

    Function, capacity and family involvement

    What is the expected or predicted baseline functioning for this patient?

    • Has this changed recently?
    • Can the patient manage RPM independently?

    Are family members or carers required to participate in care? Have the family and carers been involved in discussions around the use of RPM?

    • Have they agreed to participate and do they have the capacity to do so?
    • Has this changed recently?
    Home safety

    Is the patient safe to be at home with current community supports (or without support)?

    Are the patient’s condition or needs a danger to family members or carers?

    Support and escalation

    Do the patient, family and carers know how to request support?

    Do they have escalation plans and the capacity to follow them?

    • Can they recognise symptom changes and act, e.g. adjust medications?
    • Is there a 24-hour contact number available for support and troubleshooting?
    • Where there is no local 24-hour support, are the patient, family and carers aware of services such as Healthdirect as part of an escalation plan?

    Is a GP actively involved in the care of the patient?

    Clinical action plans and advance care planning documents

    Has the referral been reviewed and assessed to determine the patient's current clinical action plan, the goals of care in end of life discussion template or any other advance care planning documents? How do these align with RPM?

    Has there been collaboration with the patient, family and carer prior to onboarding to determine their willingness, and to guide personalised device selection, monitoring approach and RPM duration? Did this take into account the service model’s capabilities, RPM platform functionality, internet connectivity and goals of care?

    Have the agreed RPM intervention limits, established by the patient, family, carers and clinical teams in relation to the patient's goals of care, been documented, respected and adjusted as necessary?

    Onboarding and ongoing assessment

    Monitor patients across the EoLPC journey through an RPM platform, including patients with acute, sub-acute, post-acute or chronic presentations.

    Patients may start on one pathway and transition to another, as the relevance of RPM relating to the below care pathways may change based on clinical needs.

    Prevent unexpected deterioration and avoidable hospitalisation:

    • Prevent unexpected deterioration and avoidable hospitalisation for people at risk or with multiple recent unplanned presentations
    • Detect, prevent and manage early, unexpected changes in a patient’s condition, or deterioration of family and carers
    • Obtain important subjective and objective data during a stable palliative care phase to benchmark against suspected deterioration
    • Support hospital substitution, aligned with a person’s goals of care
    • Support hospital discharge or early discharge from hospital
    • Manage acute infections, such as a respiratory infection not yet requiring hospitalisation
    • Respond to acute exacerbation of symptoms or chronic disease, such as increased breathlessness, pain or heart rate, before hospitalisation is required
    • Monitor and manage chronic conditions with slow deterioration, transitioning between palliative care phases

    Enhancing care:

    • Provide symptom-based care, focusing on comfort and quality of life and based on a patient’s goals and preferences
    • Support new or altered medication use, and response to treatment, e.g. home oxygen, opioids
    • Obtain a baseline for new admissions to EoLPC services or any service providing care for a patient with a life-limiting diagnosis or nearing the end of life
    • Conduct assessment to identify whether to refer to other support services

    Improve access:

    • Substitute clinic visit for issues of access, e.g. distance, cost, pain, immunocompromise, mobility, fatigue, transport1, 8,  9
    • Allow patients to travel out of the area for a short time
    • Support isolated patients who have little to no support network and have issues attending care, including patients living alone, or within group homes, transient housing and boarding houses

    Provide patient-centred care:

    • Align care with the patient’s goals of care
    • Support the function and needs of the patients' families and carers
    • Provide data to support more informed advance care planning and decision-making
    • Support people who choose to die in their home
    • Increase health literacy, self-management and empowerment to participate in care planning
    • Provide health coaching to reduce modifiable risk factors
    • Obtain biometric data to help identify deterioration where subjective data is potentially affected by miscommunication, stigma, social stoicism, elder abuse, minimisation or embarrassment
    • Support targeted communication with patients, enabling contact to be more informed, productive and purposeful
    • Align care with cultural or religious needs or beliefs, and considering culturally and linguistically diverse populations

    Use RPM tools in EoLPC to screen, assess and monitor activity, as well as physical and psychological symptoms. RPM data supports timely decision-making, enhances care coordination and individualised management plans as part of a comprehensive clinical evaluation.

    A range of data collection tools are outlined in examples of RPM in EoLPC.

    Patient reported measures

    NSW Health has endorsed patient reported outcome measures (PROMs) that are suitable for patients and carers during EoLPC. These PROMs can be accessed by NSW Health staff through the Health Outcomes and Patient Experience (HOPE) platform. They include:

    Patient tool: Integrated Palliative Care Outcome Scale (IPOS)

    IPOS is a brief yet comprehensive measure, capturing a patient’s most important concerns, in relation to symptoms, as well as information needs, practical concerns, anxiety or low mood, family anxieties and overall feeling of being at peace. Recommended IPOS collection points are:

    • on admission or commencement of care; and
    • at change in care plan or patient and family/ carer needs (PC phase change); and
    • as clinically indicated.

    Carer tool: Family Appraisal of Caregiving Questionnaire for Palliative Care (FACQ-PC)

    The FACQ-PC measures the positive and negative components of caregiving, for family caregivers of people receiving palliative care at home. The FACQ-PC provides a measure of the family's appraisal of caregiving which can be used in clinical assessment, and has potential utility for evaluating the effectiveness of palliative care interventions. Recommended FACQ-PC collection points are:

    • on admission or commencement of care; and
    • at change in care plan or patient and family/ carer needs (PC phase change); and
    • at discharge; and
    • as clinically indicated.

    More about patient-reported measures

    Patient assessment tools

    Apply a range of EoLPC patient assessment tools, including surveys, depending on service preferences, capabilities and the patient’s presentation and needs.

    Assessment information identifies early signs of patient and carer deterioration and patient symptom burden, which helps shape management, treatment and future care planning.

    Provide upfront and ongoing education for clinicians, patients, families and carers to support the successful and effective implementation of patient assessment tools.

    Palliative Care Outcomes Collaboration (PCOC) is a national palliative care program funded by the Australian Government Department of Health, Disability and Ageing, which publishes commonly used EoLPC RPM patient assessment tools. PCOC4 uses 6 clinical assessment tools to help identify and respond to common EoLPC symptoms, which can be used independently or together:

    1. Delirium assessment: includes clinician-rated presence of delirium, and patient-rated (or proxy) assessment of delirium severity over a 24-hour period.
    2. Edmonton Symptom Assessment System (ESAS-CS): a patient-rated assessment for the severity of symptoms over a 24-hour period regarding pain, tiredness, drowsiness, nausea, appetite, shortness of breath, constipation, sleep, depression, anxiety, wellbeing and other symptoms. Proxy-rating can be used if necessary.
    3. Palliative Care Problem Severity Scale (PCPSS): a clinician-rated assessment where four palliative care domains are assessed: pain, psychological/spiritual, other symptoms and family/carer.
    4. Australia-modified Karnofsky Performance Status (AKPS) Scale: a clinician-rated assessment of performance relating to work, activity and self-care over a 24-hour period.
    5. Resource Utilisation Group - Activities of Daily Living (RUG-ADL): a clinician-rated assessment of dependency over a 24-hour period, including bed mobility, toileting, transfer and eating.
    6. Palliative Care Phases: a classification of five clinically meaningful periods in a patient’s care trajectory.

    More about the PCOC4 assessment tools and forms

    Patient activity logs

    Activity logs, whether digital and real-time or paper-based, help identify trends and provide valuable data on aspects of care, including medication administration, fluid balance, nutrition, dysphagia, patient movement, wound management, pressure care, sleep and general activity. Activity logs can be patient-reported or log observed outcomes, including patient reactions to medication administration, feeding or pressure care.

    Various activity logs are available through your LHD, specialty network (SN) and/or the electronic medical record.

    Carer surveys

    Include family and carer wellbeing as part of monitoring, to detect signs of fatigue, stress or deterioration, both pre- and post-death. Use tools such as carer experience scales and carer support needs assessments to identify, understand and address burden before families and carers experience overwhelm and decline. Surveys and feedback mechanisms for carers can identify unmet needs, whether related to practical care, emotional stress or informational support.  Include the Burden Scale for Family Caregivers (BSFC), which is an instrument used to assess the caregiver’s total subjective burden, and is available in 20 languages.10, 11

    Many patients with a life-limiting diagnosis have an expected prognosis of a year or longer and are undergoing ‘active management’, which includes disease-modifying treatment and management of acute clinical symptoms.18

    Vital sign monitoring in this cohort can increase a patient’s quality of life, permit timely treatment, prevent unnecessary hospital admissions, reduce morbidity burden and inform clinical treatment plans.12-14

    Considerations for vital sign monitoring in end of life

    Only implement vital sign monitoring during end of life care when it aligns with the patient's goals, as determined through transparent, shared decision-making with patients, families and carers. If you initiate monitoring, reassess regularly, considering the broader goals and holistic needs of the patient.12, 15, 16

    Evidence supporting both the use and non-use of vital sign monitoring in end of life care

    • Vital sign monitoring may be inappropriate and unnecessary for some end of life patients, considering patient comfort, nearness of death as a natural process, and clinical irrelevance.12 Carefully consider the ethics of monitoring vital signs when the goal of care is comfort rather than disease treatment, especially if interventions would not improve quality of life and could prolong suffering, cause discomfort or increase anxiety.15, 16
    • Some patients and carers find biometric monitoring helpful for individualised and timely symptom management and to support assessment of the nearness of death, especially for patients with limited communication capacity or who live remotely.12, 17, 18

    Adjust RPM tasks, frequency and schedule based on the patient’s individual requirements, goals of care and the clinical indication, as the RPM episode of care progresses. Avoid RPM which is invasive, painful, unwanted or produces minimal changes to care.

    Some EoLPC RPM examples may require clinician support via other suitable virtual care modalities. Ensure that clinicians are appropriately trained, operate within their scope of practice and use these tools in alignment with available resources and patient needs. Use proactive clinical approaches and give special consideration to isolated patients who may not have support or advocacy mechanisms, such as family or carers.19

    Care task

    Type

    Frequency

    Schedule

    Vital sign

    Blood pressure*

    Heart rate*

    Oxygen saturation*

    Temperature

    Weight

    Blood glucose level

    Biometric assessment, screening and/or monitoring

    Optional or as needed (PRN)

    An example of 4 x per day monitoring:

    6:00–10:00

    10:00–14:00

    14:00–18:00

    18:00–22:00

    Patient assessment tool or activity log

    PCOC4 Assessment Tools, including Delirium, ESAS-CS, PCPSS, AKPS, RUG-ADL, and Palliative Care Phases

    Comfort observation and symptom assessment chart – adult

    IPOS and IPOS-Renal

    Charlson Comorbidity Index

    Bowel chart

    Fluid balance chart

    Oral care chart

    Medication list, use and response log

    Skin integrity screening

    Pressure care and wound management chart

    Actigraphy device log (including sleep patterns, movement, falls or activity levels)

    Assessment, screening or monitoring

    Daily, weekly or PRN

    Can be implemented in response to PCOC4 results

    Specifically, PCOC recommends assessments at admission, daily and at each contact, at phase change, and discharge

    Suggested survey receipt between 7:00–12:00, or as appropriate for the patient and within the timeframe in which the service can respond

    Nutrition and swallowing assessment tool and activity log

    Food log

    Eating Assessment Tool (EAT-10)

    Malnutrition screening tool

    Pill dysphagia screening tool (PILL-5)

    Assessment, screening or monitoring

    Optional or as PRN

    Can be implemented in response to PCOC4 results

    -

    Psychological assessment tool

    Death and Dying Distress Scale (DADDS)

    Psycho-Existential Symptom Assessment Scale

    PHQ-4 Screening Tool

    Assessment, screening or monitoring

    Optional or PRN

    Can be implemented in response to PCOC4 results

    -

    Cognition assessment tool

    Aged Care Network cognitive screening tools

    Kimberley Indigenous Cognitive Assessment (KICA)

    Assessment, screening or monitoring

    Optional or PRN

    Can be implemented in response to PCOC4 results

    As clinically appropriate and undertaken by a medical professional. Carer can screen where appropriate

    Caregiver assessment tool

    Burden Scale for Family Caregivers (BSFC)

    Carer Support Needs Assessment Tool (CSNAT)

    Needs Assessment Tool for Carers of People with a Chronic Condition (NAT-CC) or Cancer (NAT-C)

    Caregiver Self-Assessment Questionnaire

    Modified Caregiver Strain Index (CSI)

    Family Appraisal of Caregiving Questionnaire

    Assessment, screening or monitoring

    Optional or PRN

    In addition to PRN, consider during onboarding to get a baseline, where appropriate

    Non-urgent call back request survey

    Check-in survey

    Unscheduled or PRN

    -

    Technology

    For general information on types of monitoring and devices, see technology to support RPM.

    RPM device selection

    • Patients should be able to use their own monitoring devices. However, these devices are unlikely to be integrated or have bluetooth capacity required by the RPM platform in use. If patients are more comfortable with and prefer to bring your own device (BYOD), they will need to manually enter their measurements into the supplied tablet or smartphone app.
    • Discuss with the patient, family member or carer their preferred RPM option (BYOD or supplied devices), both for the period when the care team will be monitoring results, and for ongoing self-management.
    • Educate patients, families and carers to use their own equipment to support their capacity to self-manage more effectively after discharge from the RPM service. Additionally, providing education for technology use can aid accuracy in data reporting and minimise reported errors that may result in increasing clinician workload.
    • If the service is providing long-term RPM, it may not be able to support supplying monitoring kits. However, if it is only RPM to support an acute short episode of care, then supplied kits may be appropriate.

    Clinicians should customise device kits to suit their patient's individual care needs and preferences, adding or removing items, as required. The below example is a kit suitable for use with intermittent monitoring, aligned with the sample care pathways above.

    Bluetooth devices pose a risk to implantable cardiac devices (ICD) when placed directly over the chest or within 6 inches/15cm. If applicable, ensure that the patient, family and carer are aware of device placement when taking measurements. Follow specific device manufacturer instructions on how to safely transmit data prior to using ‘at-risk’ bluetooth devices within proximity of their implantable cardiac device. This is critical to ensuring data is not lost when a bluetooth device interferes with an ICD.

    See also: clinician and consumer resources on deactivation of implantable cardioverter defibrillators at end of life

    End of life and palliative care remote patient monitoring sample kit
    Tablet
    • Tablet with cover
    • Tablet charging plug and cable
    • SIM card
    Biometric devices
    • Finger pulse oximeter
    • Blood pressure (BP) monitor
    • Smart thermometer (forehead or aural) or single use thermometer (manual)
    • Weight scales
    • Glucometer (with ketone-testing feature)
    • Ketone meter (if feature is not available in glucometer)
    • Urine monitoring device, e.g. output, infection markers
    • Actigraphy devices, e.g. to monitor sleep patterns, movement, falls or activity levels
    Accessories
    • Kit protective case
    • Adult BP cuffs (small, medium or large)
    • Blood glucose level test strips
    • Ketone test strips
    • Lancet device
    • Lancets
    • Sharps container
    • Urine test strips
    • Supplementary batteries (depending on patient location and mobility)
    • Quick reference reminder chart with key prompts and instructions for correct use of each device

    Monitoring and review

    Consider this guidance for monitoring and review during RPM episodes. Use clinical judgment for specific diseases and symptoms.

    Use the following guidance to provide patient, family and carer education and troubleshooting when reporting observations via wearables or surveys. This list is not exhaustive.

    Ensure families and carers are provided with education and resources regarding what dying looks like and what to expect.
    Observation Considerations
    Surveys
    • Encourage patients, families and carers to report what they want the care team to know, and not what they think the care team wants to hear.
    • Ensure patients and carers know they are able to express themselves freely and safely, including reporting changing needs. Patients and family caregivers may not communicate their distress to each other or reciprocate in distress disclosure.20
    • Encourage patients to report changes in physical, emotional, mental, spiritual or cultural aspects of their life or care, so the care team can provide patient-centred care delivery and support.
    • If a survey can’t be completed, encourage patients, family or carers to give the care team a call, as they can provide support with alternative methods or advise if a survey can be skipped.
    Pain
    • Ensure the patient, family member or carer understands how to self-report pain consistently using appropriate tools.
    • Consider the involvement of carers and family members in pain assessment, including the use of tools for non-verbal cues where verbal reporting is not possible.
    • Be mindful of factors that may influence pain reporting, including fatigue, confusion near end of life, emotional distress (e.g. anxiety) and language or cultural considerations.
    • Wearable actigraphy devices can provide valuable insights into the relationship between pain, sleep disruption and movement patterns. Many of these devices can also detect falls. Together, this data can support a more informed evaluation and treatment plan, helping clinicians identify and address underlying causes of reduced mobility or poor sleep, which may be pain-related. Not all actigraphy devices are of equal quality and data accuracy can vary. Clinicians should interpret the results with caution and consider them within the broader clinical context.
    Pulse oximetry (SpO2)
    • Peripheral perfusion issues, e.g. clubbing, acrylic nails, may impact the accuracy of finger oximeters measuring SpO2. Consider pulse oximetry carefully in people with poor peripheral perfusion to avoid triggering clinical alerts and unnecessary escalation pathways, which may increase patient anxiety and clinical workload.
    • If SpO2 is scheduled and the patient has poor peripheral perfusion, provide additional support on optimal finger probe use. Use of the finger probe on the ear is not recommended for RPM patients at home: choose pulse oximeters with ear probes instead.
    • Inform the patient, family and carers that patients should sit at rest for 5 minutes before measuring pulse oximetry and should not 'breathe up' to increase oxygen saturation.
    • Other factors can affect accurate Sp02 readings, including nail polish, skin tone and dyshemoglobinemia.21
    Blood pressure
    • Blood pressure readings are affected by several factors, including patient posture, movement and action, arm position (and support) and cuff size. For example, false readings can occur when a cuff size is used that is too small (and vice versa), and active listening or talking can add 10 mmHg to readings.12
    • Consistent parameters are required for accurate readings, e.g. sitting in a chair, right arm only, no talking during measurement.
    • To guide measurements at home, follow the Heart Foundation’s advice.
    Respiratory rate
    • Pathological conditions, including pain, pneumonia, pulmonary embolism, asthma, foreign body aspiration, anxiety conditions, sepsis and diabetic ketoacidosis, can present with tachypnoea.12 Increased physical activity in patients with underlying respiratory or cardiac conditions can also influence tachypnoea.
    • Respiratory depression may indicate progression of underlying respiratory disease or be precipitated by central nervous system depressants, such as opioids, antipsychotics, anticonvulsants, benzodiazepines or alcohol, especially when used concurrently or in patients with compromised respiratory function.
    • Patients can inadvertently control breathing rhythms.22 Where appropriate, educate family and carers to monitor respiratory rate.
    Heart rate
    • Ask about known arrhythmias during onboarding and consider undiagnosed arrhythmias when troubleshooting self-measurement errors. For diagnosed arrhythmias, watch for heart rate error alerts, promote anxiety management techniques (where appropriate), and consult the team.
    • Comparison with auscultatory clinic blood pressure readings is required due to accuracy concerns of automated biometric devices and individual blood pressure variations in patients with atrial fibrillation.
    • Note: Some blood pressure or pulse oximeter monitoring devices may not detect common arrhythmias, such as atrial or ventricular premature beats or atrial fibrillation, and potentially cause reading errors.
    Blood glucose monitoring (BGL)
    • The use of oral corticosteroids in the treatment of inflammation is associated with an increased risk of hyperglycaemia.23 For people with an additional diagnosis of diabetes mellitus, this may impact the management of their condition.24
    • Individualise the frequency of BGL monitoring depending on comorbidities, regular medications, including current corticosteroid regime and as clinically appropriate in end of life.
    Weight
    • Weight measurement may assist with fluid balance monitoring associated with various conditions, including renal and cardiac complications. This supports early identification of preventable deterioration. A ‘dry weight’ (the patient’s usual weight without excess fluid) must be manually entered into the RPM platform for each patient to allow effective tracking of fluctuations
    • To monitor against dry weight, advise patients to follow the four Ws: wake, wee, weigh and write. This means to weigh themselves immediately upon waking, after urination, and before consuming food or drink, while wearing similar clothing each time. They should manually record results in the monitoring system if it doesn't automatically upload results.
    • Assess RPM platforms according to their ability to trigger an alert for specific weight changes within a predetermined timeframe. If functionality is not available, incorporate a workflow that involves altered calling criteria to trigger alerts for weight gain and loss from an agreed baseline or review readings to detect any emerging trends.

    RPM helps identify early signs that a patient, their family or carer might be deteriorating. Symptoms of clinical deterioration throughout the EoLPC journey can be multiple, combined and varied, and predominantly relate to the primary diagnosis or the presence of co-morbidities.25 For example, symptoms can differ in malignancy vs non-malignancy, or breathlessness in chronic obstructive pulmonary disease vs heart failure.25

    Services must ensure they can respond appropriately to the data they are collecting and have clear plans for what to do when someone’s health declines, including what happens after hours. These processes may vary depending on the service model and whether RPM is managed by a centralised team or by local teams responsible for their own patients. See: RPM escalation information and Recognition and management of patients who are deteriorating (PD2025_014).

    Discuss and document a patient’s wishes for their care ahead of time. Where resuscitation could be undertaken by ambulance, emergency or inpatient services, or a patient’s capacity could be lost, clinicians can support patients to consider treatment options and document their choices. This could include completing an advance care planning document and naming a ‘person responsible’.

    Noticing early signs of deterioration is key for:

    • acting quickly to manage symptoms and give the right treatment
    • reducing physical and psychological distress
    • avoiding unnecessary trips to hospital26, 27
    • supporting patients who want to die at home
    • identifying and managing atypical symptoms near the end of life
    • review of medications, care plans, and/or goals of care with the patient, families and carer, and the multidisciplinary team using shared decision-making
    • stopping treatments or activities that are no longer appropriate or beneficial26
    • making sure patients are comfortable and treated with dignity
    • recognising when family or carers need extra help before a hospital visit is needed.1, 9

    Establish systems to securely share up-to-date data: When a patient's care escalates through RPM to ambulance and/or the emergency department, services can establish pathways for securely sharing up-to-date data. Information shared can include vital signs, symptoms, relevant medical history, treatment plan and advance care planning documents with teams involved. This prevents unnecessary tests and distressing patient, family and carer conversations, minimises delays and supports a seamless transition.

    Support sharing of advance care documents: Clinical teams can upload or record advance care planning documents in the electronic health record. Patients can upload their own advance care planning documents as part of their health information under the ‘advance care planning documentation’ section in My Health Record. Additionally, patients, families and carers should keep advance care planning documents on hand to share with ambulance staff (who may not have access to the electronic health record) or emergency departments.

    Ensure systems are in place to communicate with GPs: Ensure there are clear, reliable mechanisms for timely communication and shared decision-making, particularly during periods of clinical deterioration and escalation.

    Health coaching and care coordination

    The following considerations will assist RPM clinicians caring for patients.

    Health coaching supports individuals in behaviour change and self-management. Care coordination ensures continuity and integration of care across multiple services, providers and settings.

    Considerations specific to EoLPC include:

    • Encourage patients to discuss and document their wishes and preferences in advance care planning documents for patient-centred RPM care delivery and coordination. Use the NSW Government's planning for end of life guide checklist of the various tasks and documents involved in planning for end of life.
    • Maintain timely communication with GPs to support safe and coordinated decision-making, effective symptom management and smooth escalation of care throughout the EoLPC journey.
    • Patients, families and carers who have regular interactions with RPM services, can be assigned a primary care coordinator, depending on the available workforce. Care coordinators are especially relevant in EoLPC to coordinate the multiple different teams and services. Care coordinators enhance patient satisfaction, ensure continuity of care and minimise the stress for patients, families and carers, of disjointed care, i.e. having to retell traumatic information and experiences.8, 28 This is especially valuable for isolated patients who may not have any support or advocates.
    • Care coordinators and treating teams can work closely with Aboriginal Health Workers and Practitioners, including Aboriginal Palliative Care Health Workers, who play an essential coordination role supporting culturally appropriate care and shared decision-making with patients and families, and bridging cultural needs across different clinical services.

    Refer to health coaching considerations and care coordination for relevant techniques and considerations.

    Resources

    For carers

    Information for carers: Palliative care and end of life care
    Information and useful links for carers of someone at the end of their life or receiving palliative care.
    Source: Carers Australia

    Carer Gateway
    A program providing free emotional and practical services and support for carers.
    Source: Australian Government

    CarerHelp
    A range of tools, resources, free online sessions and information to support carers. All the resources have been checked for quality and usefulness.

    Counselling and helpline services

    Healthdirect Helpline
    Support for palliative care patients, families and carers is accessible through the Healthdirect helpline, which is available 24 hours a day, 7 days a week.

    Griefline
    Free and confidential counselling and support to people experiencing grief and loss across Australia, inclusive of remote, regional, rural and metropolitan regions.
    Source: Australian Government Department of Health and Ageing

    Lifeline
    A 24-hour telephone crisis support and suicide prevention service.

    Future planning

    Advance Care Planning Australia
    Information about planning for future health care, including making advance care directives and appointing substitute decision makers.
    Source: Australian Government

    Australian Death Notification Service
    A free government initiative to help people get in touch with multiple organisations using a single online notification.
    Source: NSW Government

    Planning for end of life
    A checklist of the various tasks and documents involved in planning for end of life, including where you can get professional help.
    Source: NSW Government

    Home help

    My Aged Care
    The starting point for accessing Australian Government-funded aged care services. Provides information and support to understand, access and navigate the aged care system.
    Source: Australian Government Department of Health and Ageing

    Financial assistance

    NDIS
    Offers funding and support for people under 65 with a permanent and significant disability.

    Palliative care

    Palliative Care Australia
    The national peak body for palliative care. Provides information about palliative care developed for patients and carers.

    Seeking support for palliative care
    A range of palliative care services, with availability depending on where consumers live. Some are free, others may have a cost.
    Source: Cancer Council

    We publish a range of resources to support clinicians, patients, families and carers, including:

    The Aboriginal Health and Wellbeing Network’s shared decision-making model, Finding Your Way, offers a culturally safe, two-way approach to care planning developed with mob, for mob.

    The Clinical Excellence Commission publishes a range of resources for clinicians, including the:

    • AMBER Care Bundle: a systematic approach for the multidisciplinary team to follow when clinicians are uncertain whether a patient may recover.
    • Last Days of Life Toolkit, including the Prepared Model: offer practical and compassionate guidance for clinicians supporting patients in their final days. Covers early recognition of dying, optimal symptom control, culturally sensitive care and meaningful conversations with patients and families.

    Advance care planning

    Professional Resource Hub
    Provides comprehensive support about advance care planning for health professionals, offering evidence-based information, practical resources and education.
    Source: Advance Care Planning Australia

    Palliative care

    Health Professionals and Palliative Care
    Palliative care evidence and tools for health professionals and information about death and dying for the whole community.
    Source: CareSearch

    Assessing and Managing Symptoms
    Learn palliative care knowledge and skills for undergraduates. An Australian Government-funded learning resource focusing on life-limiting conditions and their associated differential patterns of illness referred to as illness trajectories.
    Source: Palliative Care Curriculum for Undergraduates (PCC4U)

    Centre for Palliative Care
    Education, training and research to improve palliative care practice across Australia. Based at St Vincent’s Hospital Melbourne and affiliated with the University of Melbourne.

    Palliative Care Outcomes Collaboration (PCOC)
    Clinical tools information and resources for patients, carers, families, the general public, clinicians and researchers on palliative care.
    Source: Australian Government Department of Health and Ageing

    Supportive and Palliative Care Indicators Tool (SPICT™)
    Used to help identify people with deteriorating health due to life-shortening conditions, including frailty in older age.
    Source: University of St Andrews

    End of life care

    End of Life Directions for Aged Care
    Information, guidance and resources for health professionals and aged care workers to support palliative care and advance care planning. Includes a dedicated information page for palliative care in diverse populations, which supports palliative care coordination for Aboriginal and Torres Straight Island People, CALD and LGBTQI populations.

    End-of-Life Essentials
    Online learning opportunities and practice resources for doctors, nurses and allied health professionals. Designed to improve the quality and safety of end of life care in hospitals. This includes the SPIKES Tool, which provides a framework for communicating distressing information in an organised and empathetic way.
    Source: Flinders University

    Acknowledgements

    View the list of people who contributed to this project

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